Pictures!!

 Here are some pictures from the week! I have to say...I'm loving the fact that the boys are beginning to play WITH each other more...so much fun to watch!!!

Kellen is showing Carson the ropes

Now Carson thinks he is going to show Kellen something else : )

Love this picture! Two of my three handsome men!

Kellen LOVES playing peek-a-boo with Mimi

This guy LOVES his bouncer!

Starting to get some hair : )

Kellen's new thing...trying to lick the bubbles in the water!

Look at Carson's face...pure amazement!

We love blowing bubbles!

Playing with 'the truck'

Carson was SO excited to see bubby this morning!

"Interesting"

"Interesting" is not what you usually want to hear when medical professionals are talking about your child's case but it seems like that is what we often hear when talking about Carson. From the beginning, nothing has been 'by the book.' But I guess this just adds to the miracle of Carson and his amazing story!

Thank you all for the prayers....Preston, Carson, and I had another smooth trip to and from STL. Once again, the day was longer than expected but Dr. Costa, his ENT, spent close to an hour with us, discussing Carson's case. We started with the swallow study and like I said, the results were "interesting" in the Speech Pathologist's words. The good news is that there is still no concern about aspiration, meaning no food or liquid penetrates the airway! The interesting part was that the liquid just slowly trickles down the back of his throat, eventually triggering a swallow but then when the food enters the esophagus (tube leading to the stomach) it doesn't clear out completely into the stomach, it 'refluxes' back and forth in the esophagus until he swallows again and then the next portion of food does the same thing. On top of that, he does not swallow as frequently as he should. There is also a definite sensory component to his aversion to feeding. The speech therapist recommended following up with gastroenterology to see if they felt a need to take a closer look at the function and motility of the esophagus but also continue to attempt feeding and desensitizing his mouth. What continues to puzzle me is that he USED to take a bottle and USED to take more cereal by mouth... So we will just continue to persevere and follow up with gastroenterology at some point.

Then we went to see Dr. Costa and had a long talk with him. In the end, it was decided to check into getting a second opinion at Cincinnati Children's. They are THE leading experts in airway reconstruction and airway problems. We will have to check into it because Dr. Costa said many insurances will not cover it and thus leaves it to our own resources. I plan to call today or next week to get some more information. Dr. Costa felt confident in his plan but also said "A second opinion never hurts and they (Cincinnati) are the experts...they may have ideas that I have not thought of." But in the interim, we have scheduled a surgery (October 10th) with Dr. Costa, improving Carson's safety is the main goal. At this point, Carson is trach dependent, meaning that IF his trach came out and we were not able to get another one in...he would get into trouble very quickly. Dr. Costa's goal with this surgery is to remove some of the scar tissue in his airway, hoping to open up his airway. We will most likely need to stay the night for observation after the surgery. We did briefly touch on Dr. Costa's mention of Carson needing his trach permanently and although Dr. Costa is still concerned, he said it is still way too early and Carson is too young to make that call.

Carson did SO well today...his schedule is usually out of whack, with less sleep, on days we go to St. Louis but he was all smiles the majority of the day! Part of what's so amazing about Carson and children in general is their ability to overcome the impossible and to do it with such a happy demeanor! While we were talking to Dr. Costa, Carson was just rolling around, climbing in my arms, smiling, and babbling! A person can't help but smile when they see him!! I bundle of joy all wrapped up in a cute little boy!

Thanks again for all the prayers and please keep them coming as we follow up with more doctors and for direction in our decision making process! Much love to all!

Sorry, not many pictures this time...our camera decided to 'kill' the SD card : (

Before a walk with Mimi, Papa, Nana, and Sarah (Mom and Dad went to eat)

Gaining life's wisdom from Nana

10 Months

Well our boys have met another milestone : ) They are 10 months! And their birthday happened to fall on Mizzou's first SEC conference game (hence the outfits)!! Too bad the game didn't turn out differently. Both boys are getting bigger that's for sure. Carson is 20 pounds 5 oz, 28" and Kellen is 18 pounds 14.5 oz, 29". We've had several visitors along the way, which were wonderful!

It seems that we have mostly gotten rid of the little virus that visited the Clark household. Thank you for your prayers! Carson still has a little cough but his supplemental oxygen levels have returned to near normal levels. I just continue to pray for the winter season coming up, that the boys will remain as healthy as possible.We will return to Cardinal Glennon September 20th for a swallow study and a follow up appointment with Carson's ENT. Please be praying that the swallow study is productive (meaning Carson actually takes some food in) and gives us some answers as how to help Carson learn to eat better. We also need prayers as we will likely be deciding how to proceed, with his ENT, on removing the scar tissue at the epiglottis. We will update once we know more.

Enjoy the pictures!!

Kellen is no longer easy to take pictures of...too busy!!

I'll just hide under the blanket

Love the excitement!

Once again...Kellen is off and moving : )

Finally...a smile from Mr. Kellen

Let's go Mizzou!!

We had so much fun!!!

Kayln was awesome with the boys!!

Love Carson's face

Kayln and Linda made these shirts for the boys...so cute!!

First time with an ice cream sandwich (we will NOT give up on the ice cream) Uncle Josh had the touch.

Kellen is showing Aunt Kathy and Uncle Marvin how the toy works!

Uncle Marvin reading to Kellen

Forgot to mention that we know have a billy goat, aka Kellen...yes, he gnawed on our dining room table chair : )

STL Appointments

Well, prayers were answered! Preston, Carson, and I survived the trip to St. Louis and Mom and Kellen survived the day alone in Dexter. We had a 'longer than planned' day in St. Louis. We started with appointments at 9 am and did not finish until 4 pm and that was non stop appointments. We started with plastic surgery, then to endocrinology, then the PT gym for a developmental assessment, and finally Nursery follow-up which consisted of the normal appointment, as well as a subsequent chest x-ray and lab draws. Carson was a trooper the whole time. Of course his schedule gets thrown off when you have appointments all morning with no nap. But he did amazing and LOVED playing in the PT gym with old friends (two therapists that saw him while he was still in the NICU). We then headed to Nursery follow up. Due to some of the secretions we had suctioned from his trach, the doctors felt we should swab him for the flu and check for any pneumonia or other infection, hence the chest Xray and lab work. Everything came back negative, meaning he just has a cold virus so we will just stay the course. Carson is such a trooper and always surprises the doctors, nurses, and therapists with how well he is doing!

Mom always comments on how weird it is to spend a day in Dexter when Carson is not here. It is much quieter and just SO different! Kellen crawled into the nursery several times looking for Carson. Such a sweet boy! We praise God everyday that even though there are many added stressors with the extra care for Carson, our life would just not be complete without him!

Some more pictures and a prayer request

I almost missed some of my favorite pics!! So here they are...Please also be praying that the boys can get past this little virus they caught. Both have ran fevers and have runny noses. Carson has appointments in STL on Thursday so I'm praying that he feels better for the trip.

Love this picture! Carson LOVES giving Kellen hugs but Kellen just ignores him : )

The next generation of bikers : ) We just need a side care for the monitor.

Dad got to join in for the evening walk while he was here.

Two Bundles of Joy

I can’t believe we are nearing the end of August. The Clark boys are continuing to be the joy of our lives…brightening our days with smiles, laughter, chatter, and Kellen’s new squealing! Carson is becoming more and more vocal and his babble sounds more and more like Kellen’s. This is a huge step because he only has one vocal cord (the right vocal cord’s nerve was severed with the removal of the mass) and his tongue and lip movement is not typical (again this is just an effect of nerve damage during surgery). Carson continues to sit really well and is improving on his standing balance, wanting to pull to stand with assistance, and is doing better on all fours. We continue to work on his feedings by mouth, which is one of the more frustrating aspects of his care. He originally would take a bottle, but since coming home he stopped doing that and does not do very well with spoon feeding. We believe some of this is due to oral defensiveness or aversion, meaning that he doesn’t do well with objects or food in his mouth. He gags VERY easily, sometimes even if the food is presented at his lips. But I believe the bigger issue is that his swallow function is not normal. He doesn’t swallow as frequently as he should and it also is not as effective. So prayers for this are greatly appreciated!!! We have follow up appointments on Thursday in St. Louis. I expect these appointments to go well. Carson broke 20 pounds this week and Kellen is holding steady at 18.5 pounds.

Kellen is SO much fun to watch explore everything. The keyword is WATCH : ) because he gets into everything and usually the things he is not supposed to. Overall, he is a really great little boy. He is much more content now that he can move around by himself. He is also doing much better pulling up on things and also lowering himself back down. He is starting to taste more table foods but we are concerned because he has yet to develop his taste for vanilla ice cream…can this be??? A Bunch and a Clark that does not like ice cream??? He seems to like chocolate better than vanilla.

Mom was in California this past week to enjoy a few days with her sisters and Dad came over to help for a few days during the week. We thoroughly enjoyed the time with ‘Poppy.’ He even showed us his cooking skills : ) by bringing his favorite, State Fair Corn Dogs…Shhhh, don’t tell Mom! : )

Carson directing the crew

Backseat rider tonight...he likes the front better:)

Aunt Jamey

How fun to see Uncle Tom & Aunt Jamey! So glad you stopped by!

Carson is going to give him a wet willy!

Dexter Bearcats!

Hands on the hips!

Reading books early in the morning

Kellen is showing Big Josh & Big James how to work the play station!

Feeding Kellen!

We love our Poppy!!

9 Months!!

Wow...it is hard to believe that the boys are 9 months old today! How times fly and it does my heart good to see how far we have come! At times, it feels like the progress is slow if not at a standstill but when I look back to even 3 months ago, I am amazed!!

Kellen is now mobile enough to be really dangerous! He is crawling and pulling up on anything he can get his hands on. The problem is that he is NOT so graceful with his descent...sometimes falling like he is a tree trunk : ) Bruises, bumps and scratches...here we come! Kellen still is not the greatest eater but is doing better and continues to gain weight. Praise the lord! He continues to show his personality, babbling non stop ("Bubububu...byebyebye...bababa...Mamama") and has taken to growling recently. I can't lie, this little boy is a bit spoiled and knows someone will come if he starts whining or whimpering : ) He continues to make us smile with his giggles, laughs, and other antics!

Carson has also made big strides...he is now getting really good at sitting up and just recently has shown a lot more interest in standing! He is also starting to make more sounds and voice fluctuations. He continues to be very attentive to things going on around him. He is a pretty happy boy! We continue to persevere on his feedings by mouth, although this is the one area that has been slower to progress. He only requires supplemental oxygen when he is sleeping now and this is only a minimal amount. His grins and laughter is contagious and brighten all of our days! We will go back to see some of the doctors at the end of this month.

Thanks again to everyone for the continued prayers! They have really helped to get us all to this point! Blessings to all as the summer comes to a close and school starts back up again!

Knocked the bear down trying to get away : )

Our sweet Kellen

"I'm coming Mom"

Little toes

So funny!

Happy boy!!

Coming over the couch (Carson wanted me to tell everyone that he was sinking into the middle of the couch...Kellen isn't really that much taller : )

Playing ball with Mimi & Papa

Our nightly walking crew : )

Playtime!